Ethical issues in pediatric critical care neurology
Section snippets
Informed consent
To some extent, the basic dictum of medical ethics since Hippocrates of primum non nocere (“first do no harm”) has been supplanted over the past half-century by the guiding principle of respect for individual self-determination and autonomy.2 Indeed, the physician’s obligation to obtain a voluntary informed consent from the patient and/or the patient’s responsible surrogate or guardian has become the “ethical cornerstone of contemporary medical practice”.3
Three conditions must be fulfilled for
Futility
The issue of futility in medicine is not a byproduct of our modern era. Hippocrates stated that “to attempt futile treatment is to display an ignorance that is allied with madness.”15 No universally accepted consensus definition for medical futility currently exists.16 Perhaps the broadest definition is one that characterizes medical futility as occurring when a proposed intervention offers either no benefit to the patient above a minimally accepted qualitative or quantative threshold or
Justice/rationing
Whereas futility involves an individual decision taken at the bedside involving the reconciliation between personal values and scientific reality (as best that can be determined),19 rationing reflects an economic decision based on the realization of limits due to costs and/or availability of the delivery of health care resources to the population.25 These are very separate (indeed nonoverlapping) issues. Futility should not be a pretext by which rationing is achieved, and neither should the
Clinical research
For any field of medicine to advance, applied clinical research is ultimately necessary. For the societal good of advancing knowledge and improving medical care, clinical research requires that some individuals be put at a potential risk.26 Thus there exists a potential for exploitation and harm to the subjects of clinical research. Considerable efforts have been expended over the past half-century to minimize this adverse potential.27
The necessary requirements for the ethical conduct of
Neurologic determination of death/permanent vegetative state/minimal conscious state
The development of CCUs and the mechanisms for long-term cardiorespiratory support precipitated the conceptualization of “brain death” in which the irreversible cessation of cerebral and brainstem activity is compatible with the end of life.36 Explicit standards and protocols for the neurologic determination of death (NDD) have been developed for both adults and children.37 Brain death is a biological construct, not an ethical construct, and for this author its recognition and diagnosis at the
Conclusion
The neurologically compromised child in a CCU poses a complex medical challenge to caregivers. Concurrent with these medical and scientific challenges is an ethical challenge to maintain appropriate standards of care that are consistent with our most valuable principles of respect for persons, beneficence, and nonmalfeasance. To provide the best overall quality of care, these principles must be embraced and put into practice as rigorously and with as much enthusiasm at the bedside as our latest
References (43)
Introduction
Semin Pediatr Neurol
(2002)Informed consent in pediatric neurology
Sem Pediatr Neurol
(2002)- et al.
Children as decision makersGuidelines for pediatricians
J Pediatr
(1989) - et al.
Legal aspects of transfusion of Jehovah’s Witnesses
Transfus Med Rev
(1991) Futility
Semin Pediatr Neurol
(2002)- et al.
The ethical boundaries of drug research in pediatrics
Pediatr Clin North Am
(1997) Ethics of clinical research in children
Semin Pediatr Neurol
(2002)Clinical ethics and developmental delay
Semin Pediatr Neurol
(1998)- et al.
The minimally conscious state in children
Semin Pediatr Neurol
(2002) Consent to TreatmentA Practice Guide
(1990)
Legal Issues in Pediatrics and Adolescent Medicine
Minors’ consent to treatmentA developmental perspective
Prof Psychol
Informed consent, parental permission, and assent in pediatric practice
Pediatrics
In their own handsAdolescent refusals of medical treatment
Arch Pediatr Adolesc Med
Parents’ perceptions of decision making for children
J Law Med Ethics
Consent for medical services for children and adolescents
Pediatrics
Guidelines for urgent care in school
Pediatrics
Minors’ rights to consent to medical care
JAMA
The illusion of futility in clinical practice
Am J Med
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2011, Journal of NeurologyThe window of opportunity for treatment withdrawal
2011, Archives of Pediatrics and Adolescent MedicineFunctional neuroimaging and withdrawal of life-sustaining treatment from vegetative patients
2009, Journal of Medical Ethics